Wednesday, September 29, 2010

it's the final countdown.....again! Ugh

Today my nurse is coming to take out my picc line.  Now that should be a fun feeling.

Tomorrow I have a 6-8 hour neuro ophthalmology appointment.  Yeah I Have been to a regular eye doctor but because I am wonder woman and have super power vision I have to go to a special eye doctor.

Then on the 7th I have my cat scan for the hole in my head and an appt with my neurosurgeon after that.  Then I find out when I get my diamond encrusted platinum plate in my head.  That day is going to rock my world because it is the one year anniversary of my falling down and cracking my head and basically making the greatest mistake of my life.  One friggin year and all this crap is happening on that day.  It is just too damn weird.  I mean I knew I was going to have to have a one year follow up.  But all this other stuff, the CT scan and trying to figure out when my next surgery is going to be is a bonus.  Oh the stuff I do to see my easy on the eyes neurosurgeon.  HAHA!!  The one year follow up in a normal world would just be checkin me, making sure I was mentally ok and did not have any major TBI issues like rage, major memory loss, bad cognitive skills, speech impediments, or any other shit that could have gone down with TBI.  That is why I call myself Wonder Woman.  I am not as effed up as I could be.  I am effed up for sure, but not as bad as I could be.

I hope this surgery is somewhat fast.  They technically want to wait 6 weeks after the picc line is out to make sure the bacteria is really dead.  I kind of want the surgery now.  Just order my hott ass pimped out plate and install it.  Get it done now and not in November or whatever.  I cannot stand the idea of ruining the holidays yet again!

Sometimes the guilt that comes along with this whole situation is the worst.  I feel like I say sorry over and over all of the time to everyone for all different things.  I am just sorry for it all.

Anyhoo, enough distracting myself.  The nurse should be here soon to strip me of my line.  UCKY!!!  Good stuff.  But hell, this shouldn't be too bad with all I have been through.  Bring it!!!

So this is the final minute countdown for the picc line removal.  And starting the final countdown for the rest of my doc appts coming up and for my re-birthday.  Re-Birthday is the anniversary of the beginning of TBI,  That is how some of us TBIer's roll.  I am gonna be 1 years old going on 32.  :)

Thursday, September 23, 2010

pieces of me

So I have had a few good days in a row.  Almost a whole week!  That has not happened in a LONG ass time.
I have even driven in the epic apocalypse rain storm we had here.  This is from someone who a few months ago could not even drive with the windshield wipers going.  They were mesmerizing and forget it if there was lightning.  It was all too much to look at and I could not pay attention to driving.  Maybe this time my brain was put back together the right way for driving.  HA!  I am still working on some deficits with driving but I am kicking ass for sure.

Still jobless, but it is what it is.  Just glad I have a peep now that also does not have a job so I have someone to talk to and hang with.  Maybe that has to do with my good mood.

And not that I always want to harp on and bring up TBI, but hey folks it is part of my life, it is part of me.  It is a big part of me now.  And FYI, the one year birthday of the new me is coming up on 10/7.  10/7 is the last day i remember so that is my anniversary even though the accident happened early a.m. on 10/8.  Oh well, one year of new me!!  But this rambling is about this.  I have a tbi friend that goes to support group and she sent me this and I am sending it all to you.  Some of this does pertain to me.  Please read it and remember this.

What Brain Injury Survivors Want You to Know
Complied by: The ‘Amazing’ Brain Injury Survivor Support Group of Framingham, MA

I need a lot more rest than I used to.  I’m not being lazy.  I get physical fatigue as well as a “brain fatigue”.   It is very difficult and tiring for my brain to think, process, and organize.  Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside.  Cognition is a fragile function for a brain injury survivor.  Some days are better than others.  Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time;  it is usually measured   in years.  It continues long after formal rehabilitation has ended.  Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations.  Crowds, confusion and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it use to.  Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation – but that is because I have trouble following all the different “lines” of discussion and it is exhausting to keep trying to piece it all together.  I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW!  And it’s not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking.  Later I will be able to rejoin the conversation and really be present for the subject and for you.

Patience is the best gift you can give me, allowing me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain.  Rushing and multi-tasking inhibit cognition.

Please listen to me with patience as well, trying not to interrupt, allowing me to find my words and follow my thoughts.  It will help me rebuild my language skills.

Please have patience with my memory and know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child.  I am not stupid, my brain is injured and it doesn’t work as well as it used to.  Try to think of me as if my brain were in a cast.

If I seem “rigid”, needing to do tasks the same way all the time; it is because I am retraining my brain.  It’s like learning main roads before you can learn the shortcuts.  Repeating tasks in the same sequence is a strategy for healing.

If I seem “stuck”, my brain may be stuck in the processing of information.  Coaching me, suggesting other options or asking what you can do to help me figure it out.  Taking over and doing it for me will not be constructive and it will make me feel inadequate.

You may not be able to help me do something if helping requires me to interrupt what I am doing to give you directives.  I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD, obsessive-compulsive disorder but I may not.  It may be that I am having trouble registering what I am doing in my brain.  Repetitions enhance memory.  (It can also me a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now.  Tasks that used to feel “automatic” and take minimal effort now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up.  Please help me and encourage all efforts.  Please don’t be negative or critical.  I am doing the best I can.

Don’t confuse Hope for Denial, We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day.  No one can know for certain what our potential is.  We need Hope to be able employ the many, many coping mechanisms, accommodations, and strategies needed to navigate our new lives.  Every single thing in our lives is extraordinary difficult for us now.  It would be easy to give up without Hope.

Monday, September 20, 2010

just me...raw

Bits of my life.

A home care nurse comes weekly to work on my picc line and to draw blood from me.  My blood needs checked weekly to make sure the infection I had in my skull is gone.  I don't know why I need to be checked for that all of the time since the part of my skull that was really infected is no longer in my head. Yeah, I have a hole in my skull now.  I am hard core like that.  That is why I eventually am getting a diamond encrusted platinum plate.  And I am gonna get it on the outside not the inside.  I am gonna rock that bling like no other!  I don't need grills on my teeth, I am gonna have a plate on my head!  AWESOME!!

I am still looking for jobs.  It is one of my hobbies.  But I am almost giving up.  Not quite, but almost.  I doubt myself lots.  Who wants someone that is half broken?  Honestly, who would want THIS working for them?  The good thing is, is that since i am labled disabled now if someone hires me that is not in the non profit sector I am a tax break for them.  So that is my spin.  To hell with my awesomeness, hire me because I am a tax break for ya!

One of the things that sucks the most about my particular TBI (traumatic brain injury) is the loss of friends/relationships.  Just when I most needy some of people in my life disappear or are forced to not be involved.  And some people have stayed around but it is not the same.  I know a lot of that rests on me because I am a bit different and kind of self centered now and the same things don't interest me that used to.  I feel like I always need to be doing something, not just sitting watching tv or movies or something.  That will change in time once I start being around people more.  I promise it will change.  It is just that when I am finally around people all I want to do is talk talk talk and do stuff since I spend lots of alone time.
It is common for people with TBI to lose friends.  Its just weird and sucks that is a common factor.  We all have different forms of TBI yet we all have lost friends.

I am a bottomless pit of needs and wants.

One cool thing is that I am trying to make new friends which is something I boycotted months ago.  I refused to believe that I was losing my friends and that I needed new people.  Plus I was afraid to have to explain myself if I did something weird or repeated myself lots or something else tbi related.  But I have self esteem back now.  I don't give a shit what people think of me anymore.  Take me or leave me, I am what I am.  So now I am throwing myself out there and meeting new peeps.  So far so good!  Hi new peep!  And for those of you that may have left me.  Your loss.  I thought it was my loss at first.  And I am not saying it doesn't suck, but.....your loss is bigger than mine.  I am awesome and don't you forget that!

Friday, September 17, 2010

Baby's big day out!

It was so bloody nice to wake up today with a purpose.  I had to get the car to the dealership for service.  That meant that I had to drive on the Parkway.  And I friggin did it.  WOOT!!  Was nervous as hell at first.  Got sweaty palm disease.  HA!  Thats what happens when my nerves are shot!

But it was nice to wake up and shower like I was going to work.  I had something to do besides develop a more meaningful relationship with the walls.  Me and the walls are an exclusive couple.  Though there are lots of walls. I guess I am a wall slut.

And before I left the UPS man came to deliver me some more drugs.  AWESOME!  Believe me, somedays I wish it was the fun drugs.  Imagine what those could do to my scrambled brain.  Those of you that know me...just imagine what I would be like.  Can you say off the hizook hysterical I am sure.

As you can tell, since this is somewhat amusing I am in a decent mood today.  Yesterday pretty much wanted to blow up the world.  I put on a good front on the phone or via text etc, but I spent the day having a woe is me pity party I hate everything and almost everyone day.  Those days are friggin great!!  Those are days I am glad I am not employed just so I can be miserable in my own damn way.  But that was yesterday and today is a different day.  So far happy happy happy and I am gonna roll with that.

Wednesday, September 15, 2010

Meaningful relationship with my walls

Yesterday I spread out my fun by going to the grocery store during the day and then at night I drove over to the bank and deposited a check and then came home.  Gotta spread out the excitement.  The best part was at the store 2 people asked me if I had cancer.  At first I thought maybe my partially bald C spot on head was showing, (not that I care) and then realized it was my picc line they were referring to.  Really, who the hell asks people that!!  WOW, that was RUDE.

Then last night I wrote a letter.  An angry, snarky, pissy, thick with Kara sarcasm kind of an F you letter.  It is not going to the recipient as is.  Once I center myself a bit it is getting edited and going out.  Hey for someone with TBI and impulse issues thats a big step.  But I would LOVE To send it as is to the person it is meant for.  Hell, this person screwed me hard core and is now seemingly afraid to talk to me.  Hell, I am not THAT scary.  And no, this letter is not for the person whom I was in the accident with.  It is for someone who has hurt me in a different way and this time I don't get the luxury of being in a coma for some of it.  Yeah, who would have thought a coma would be a luxury!

Through all of this I have developed a deep and meaningful relationship with my walls....again.  In the winter from hell when I was trapped for days and days and days I actually made a face on my wall.  Cut out eyes and lips and used the thermostat as a nose.  LOL, at least I am creative.  This time I have not gone to such extremes.  But me doing nothing is not me at all.  I used to always be go go go go go.  Now it is not so much because of limitations but just lack of places to go or  lack of people to go with.  I would still like to know what the hell happened to some of my friends.  Some of my close friends and then some of my work friends.  And I don't care if both sets of friends read this.  You need to know I am annoyed with you.  WTF????  I am still me, I still like to have fun, I still like to hang out, I still like to talk, I still like to laugh and smile and I still like doing other stuff.

Monday, September 13, 2010

Yakkity Yak

So today I started my day talking on the phone with someone I never met before.  She is me, but in another state.  We are the same person.  It is so cool.  She also has brain injury and we bonded on the support group site and have gotten closer and closer.  It is so cool.  We understand each other.  She is high functioning brain injured too.  We seem to have some of the same deficits and frustrations and the same wicked sarcastic sense of humor!!!

Then I had to get off of the phone with her because my home care nurse came in to take my blood and check my picc line and all the other cool stuff that hard core cool 31 year old females need to have done.  And my nurse is me in scrubs!  Pale, freckles, another wicked sense of humor.  She is awesome, except for the fact that she is part vampire always taking my blood!  And I like her because she supports me in my career choice.  Or what I want to try to do since i am STILL LOOKING FOR A JOB!  (ok, I am going to get off of that subject because I tend to go off the banger)  At least I have some control and class.

Then I was on the phone with another friend whom I have never met before in person.  Yeah, I am jabber jaws with strangers.  Stranger Danger!!!  HAHA...see what happens when I am left to my own devices??  

It just sucks being a social being and not having a job.  I think that is one of the reasons I like my doctors appointments so much because then I am around people during the day when others are at work.  And I can't just sit and watch tv.  I cannot do it.  Well I have it on for noise as I live on facebook.  I am on FB so much because it is an activity.  It is not just sitting and staring at the tv, there are buttons to hit and different pages to look at etc.  Yeah an activity, but a lame ass one.

I now have the cleanest apartment known to man.  Cleaning is going to be my new hobby.  Maybe I will start a maid service.

I am actually proud of myself for one thing today.  I went balls to the wall and took myself on a drive.  Yeah for most "normal" people that would not be a big thing, but for me that was awesome.  Some background.  After my original injury I was not allowed to drive until I passed a State Evaluation.  I passed that eval and then we had the friggin winter from hell!!!!  I couldn't get off of my street if my life depended on it and i was too damn scared to drive.  Then finally I was driving, baby steps and getting more and more confident.  And then bam!!!!  My galbladder exploded and I was on driving restrictions because of the meds.  And then 2 days after I was cleared to go back to life BAM had skull surgery and was restricted because of meds again. And now I am working on building up my self confidence with driving again!  So yeah, I went for a random drive, with no real destination which is also a BIG step for me.  I normally have to have a route planned out and visualized before I can go anywhere.  But not this time!  *HIGH 5*

Friday, September 10, 2010

it's a doozy. Parts of my life since April

Pieces of my life.  These are snippets of entries I put on a support group site.  You can see some ups and downs.  As you call can tell, I have no shame about sharing my life with you all.  Maybe you can understand me some more.  Do not judge my grammar and spelling.  These are all just snippets I am sharing with you from honest to god entries I put on a TBI support group site.  None of you ever see this side of me at welcome to a big part of my world.  And this is by no means all of it.  I will save you some of the suffering of having to read it all.  Actually I am just covering my ass, there are some things you all are not allowed to know about me.  :)  I have second guessed myself if I should post this, but hell.  Since the scramble I have been mostly balls to the wall alot!  So here goes nothing.............

April(6 months post accident)
 I never really did doctors before my TBI and now I see all sorts monthly I am sure most of us feel this way, but I cannot bloody wait to be "normal" again.  Well as "normal" as I can be. 
I love my neurosurgeon!!!  yeah he is easy on the eyes, LOL,  but I love how real he treats me.  Like a human being and not just a patient.  Also love that he calls me super star!!  That boosts the ego for sure.  And that is needed some days.
perpetual eye twitch is ok since all the nerves are still trying to heal.  After all I did have to have 2 different kinds of brain surgeries so of course there is some  damage.  I have been very patient so far, but I sometimes I catch myself.   I am like "It has been 6 months I should be all ok now!!"  I know that is silly, but sometimes I have hope that I should be all "normal" by now. 
Thursday I have to have an EMG to check for possible nerve damage.  I get wicked tingles in my right leg and some numbness.  My neurosurgeon reassured me that if I need another surgery he can do it.  UGH...the things I do to see a good looking man.  LOL.  In all honesty, yeah I joke about my situation just to help myself.  I gotta joke. 
Sometimes I am just overwhelmed and feel like I need to doi too much.  I try to  be like my old self.  I have to stop doing that.  I need to learn the new me and love the  new me.  I just get so frustrated with my downfalls.
And this dis-inhibition, while amusing to some, is going to get me in trouble some day.  I laugh about it, but oof!  WOW!  Thankfully I do have some smarts about myself and what I am doing
Does anyone know where my life went??  I miss it!
I get more and more frustrated with the new me. 
I am so sick of being angry, sad, and overwhelmed.  I do what I have to do on a daily basis, but it is getting harder and harder to pretend.
I am only 6 month post TBI.  And most people don't understand TBI.  Yeah, I am mostly normal, but I do have deficits!  I wish people would understand!!!!  Maybe I should just wear a bandaid on my forhead so that people remember that I did have my brain scrambled and reassembled.

May (7 months post)
Work work work, it feels like that is my life.  Well, for the most part it is.  I know I am lucky I can work, I just miss my social life!  I used to be able to balance it all, and I used to be able to see my friends more.  Now that I am too freaked to drive at night, I don't really have a social life.  I feel like I am 14 waiting for mom and dad to drive me somewhere instead of a 31 year old!  Hell, if I lived with mom and dad it would probably be a bit easier for transportation. 
Patience patience patience, I know.  I need to embrace that I will not be the same as the old me, but that doesn't mean I can't be pissed about it.
One bright bit, I went to K-Mart today by myself without any anxiety or feeling of being overwhelmed.  Though, I do know this Kmart from before TBI and I was kind of able to visualize a  path to get to exactly what I needed.  Got a little bit of nervous sweaty palms and a bit of sound overstimualtion, but I was able to do it!
I am getting called out a lot on my mood  because it apparently is written all over my face.  One of the kids I work with says "miss kara, you are angry today, you have angry face."  or today i was smiling because it was a bit of a stress free day and the same kid says to me "miss kara, you are smiling so much today, is your half of your brain that was broken healing better?"  This crushes me that he can read me like this.  I try to explain to him that I am not angry with him, and sometimes he gets it and sometimes he doesn't.   I even have one co-worker that comes up to me and whispers in my ear that I need to be nice.  He can see it on my face when I am upset and getting ticked off.  This all goes with the feeling of being WAAAAAY OVERWHELMED with work and frustration with my "new" self and my deficits.  Some of my co workers who knew  me before the TBI don't get me now.  I explain that I am a bit different and I appologize all of the time for looking angry, but I can't help it.  My face seems to be solidly in the angry/frustrated/sad place.
I try to change the look on my face sometimes, but that takes so much energy.  Of which I need for work and life in general.  I miss the old me. 
I never went to doctors before this.  And now I feel like I practically live at different doctor offices.  Some of them, I am like Norm walking into the bar on Cheers.  I walk in and the receptionists are like "KARA!!!  how are you????"

 June (8 months post)
  Yesterday and today!  I drove myself and went to K-Mart, the grocery store, Old Navy, and Ulta.
WITH NO ANXIETY!!!  The grocery store did not rock my world like it normally does.  I split a big trip into 2 days.  So yeah, 2 days of the grocery store but making the trips smaller seemed to have helped.
And today I was able to walk/run a mile in under 25 minutes.  It is not amazing time, but for me that is great!!  I am slowly getting back to my old strength!   I would do a happy dance but I think I wore myself out!!

So i was discharged my one doctor, to only gain another possibly 2.  I finally switched PCP's to keep my medical records within one hospital system.  Basically for my sanity so I don't have to explain everything to new doctors and to make sure there are no mistakes along the way.  So I went to my new pcp and had my ear checked out.  My left ear has been driving me nuts since the accident.  I feel and hear clicking all the time.  It feels squishy.  My ear was always blocking and popping big time after the accident and the surgeries.  It was checked once and everything was Ok.  Finally I just could not take it any more and had my new doctor look at it.  There is major fluid backup in the ear drum and ear canal. it is bubbling.  YUCK!!!  That explains the squishy feeling.
The thing that really stinks is that I was born deaf in my right ear.  So I only have my left ear to hear out of.  The feeling of squishy and clogging has impeded my hearing.  And I might have to go to an ENT to get it all checked out too if the meds my doc put me on don't help. 
Yet another fun part of TBI, brain surgeries.
I spend so much time and money at doctors, money for parking, and money for meds it is ridiculous.  So frustrating.  Another part of being 31 going on 99. 

July (9 months post)
 Yesterday after hours and hours of sitting home alone a friend finally returned one of my calls to come over.  That was around 4:00.  I was all by myself from about 4:00 friday until then.  I do not like alone time at all!!!  I am more needy now for companionship, I have told people that, but I still always feel alone and spend lots of alone time.
Now, I was able to smile at some point yesterday because I was able to make beaded bracelets, while chatting with my friend and listening to music.  This required eye hand cooridination, concentration, multi tasking, good vision.  I was so freaking proud of myself for that accomplishment because months ago i would not have been able to do it at all.  Or i would have started, gotten frustrated and quit.
  I have already cried a few times today.  I am just so upset.  I always second guess myself now since the I suddenly a bad person??  Why do people not hang out with me???  where did everyone go????   I know this feeling is one of the common ones with TBI people and it sucks!!  I can't stand it.  So here I am sitting in my apartment on my computer
I finally called my PCP office to get my head checked.  I did not know who else  to go to since i was discharged by one doc from the rehab hopsital and I don't see my neurosurgeon until october, my one year anniversary of the accident.
But our medical system is sooooo cool here.  My neuro's office saw that i was having some concerns with my head and called me.
I saw my PCP and they sent me for a CAT scan STAT.  They did not want to wait around.  Better safe then sorry.  They just want to check me out since my skull has been feeling odd.  It feels very very tight and very heavy.  I called my neuro office to let them know i got a scan and they have me scheduled now for the 22nd.
Not bad work for a TBI to get done all by herself in one day.
It was just REALLY confusing in the one hospital.  They re-did some stuff it is under construction and i thought I was lost.  I was getting so confused in the building because things were not the way I remembered them.  I walked in lots of circles.  Embarassing, but I accomplished my goal.  I just hate having to do all this stuff on my own.  But oh well.  I just need to get used to that.

Today had appt with PCP at 8:45 a.m. to go over my problem with my ear from my accident and my head pain/weirdness  Said I needed an MRI to double check the nerves..  Water build up in ear drum, bad clicking and hearing going down hill.  Then he sent me to ENT doc at 1045.  There is scarring in my ear drum along with water build up and possible Eustacian tube deficiancy or something like that.  ENT sent me to Audiology to get my hearing tested. Around 12:00. then at 330 had to go to my MRI. 
Oh my goodness for all of this for TBI girl.  Talk about overwhelming and a bit confusing.  Thank god I take my notebook with me everywhere to write everything down.  Again the part i hate about this the most is going through all of this alone and worrying about the "what ifs?"  I try to stay positive but there is always the part of me that freaks a bit.  What if the docs tell me something I don't want to hear or something I can't handle or if there is some complication?  I can't handle that on my own.  Oh well, it is what it is.

My parents came  out to visit me.  They came out for their 34th wedding anniversary too.  All of a sudden I was doubled over in pain, could hardly talk or breath.  Couldnt sit or stand, just kind of wanted to float.  Dad called 911 and off I went.  Had to have my galbladder removed.  Apparently it was really really really infected and swollen.  It was a mess.  And in the process I guess my liver got nicked a little.  So I had to have another procedure.  had to have a stent placed on my liver.  I am not wonder woman so much any more.
I am having a hard time seperating that this has nothing to do with the accident and getting TBI.  It is too close together.  I feel like I a failiing at life.  And I feel bad for my parents. They are now going to stay with me for 2 weeks.  Basically to help me and to help my mental health since they know I am depressed and always lonely and I depend on work for my life.  I am not allowed to work for some time either.

August (10 months post)
  I am so sick of saying "I am sorry" all of the time for every little thing I do. Sometimes I feel like a disappointment. a website for tshirts, cups, pins, etc.  They have a TBI section with some pretty good stuff.  I love all of it and want it all.
Some highlights....pins/shirts with a pic of a brain with a band aid on it and it says, I am still me"
I am a TBI survivor.
Not tonight dear I had a craniotomy.
TBI has touched my life....
anyway, just check out the site, the stuff is amazing and i want it all!!
Yes, I am still me, frustrated, annoyed, jobless, galbladderless (lol), and still brain scrambled.
I may have an infection in my skull/brain.  Gotta get more MRI's.  Thank god I love my neurosurgeon. 
And i also have to go to a neuro opthamolgist.  (neuro eye doctor) because I am seeing floaters a lot now.
Doctors doctors doctors doctors doctors.
I love me my doctors.  Hey, at least it is air conditioned in all the hopsitals where my appts are.  So that is one way to beat the heat.  See, I can find some silver linings.

MRI and blood work was inconclusive really.  Neuro is confused too.  So in hope of alleviating some of my funky feeling in my head I am scheduled for a small head surgery on Tuesday.
They are going to cut some of the scalp and clean some area in my skull and then stitch me back up again.  This should be just an overnighter.  DOne on tuesday and hopefully discharged on Wednesday if all goes well.
If this doesnt help then down the line i will need to have another craniotomy.  This is one where they take a piece of the skull out and then eventually put it back in.  This time they might have to use titanium or something.  Last time i had this done I had my original bone put back in.
So yeah, on Tuesday I have the little head surgery and I also have a procedure scheduled on Thursday to get the stent removed from my liver.
Honest to god, I am just moving into the hospital!  Shit!!!
Was in the hospital for 5 days this time.  Went in for my litlle surgery which was to be a clean up and they ended up having to do a bit of a craniotomy again.   There was in infection in my skull flap that they replaced in December.  So they had to cut a piece out that was infected.  I do have a hole in my head again, but I dont have to wear a helmet this time.  And I am rocking a super cool haircut. (read with LOTS of sarcasm)  Looks like I have a boomerang shaved into my head. 
I know have a picc line too so I can shoot myself up with antibiotics for a month to hopefully kill this bug that is in me.
My life just feels like a mess.  Everyone tells me I am lucky to be alive.  Yes, I know that, but I am not living a life, I am just surviving day to day.

My brain injury and surgeries is a HUGE part of my life now and is basically all I want to talk about because is it the only thing going on in my life.  And it helps me deal with it all.
I keep saying I am not "normal enough" for the "normal" world, and yet I dont really fit in the tbi world.  I feel lost sometimes.
Even my home nurse, (who helps with my IV meds I need for now) says You are a mess on paper, I didnt know what I was getting into.  I cant believe how amazing you are"  I know she is saying that to be nice and supportive.  I know I am amazing for where I am, but statements like that dont help me.  Makes me want to cry sometimes.  That just goes with feeling lost
I know this is just another ripple in my life.  I know I can get over this all and I am just feeling kind of sorry for myself now.  "It is what it is"  I can overcome this all and kick it in the ass.  I just feel like I can ramble on about nothing and everything right now.

  And the sad thing is, is that I feel the most comfortable at hospitals.  I dont get weird looks for having my funky hair cut and wearing a picc line.  I actually dont mind being in the hospital.  Hell, I am around people all day and can talk to everyone and feel like I am not complaining about life.  And I feel validated.

Had my appt with my neuro today.  I got my stitches out!!!  YAYAY...did a happy stitches out dance!   I wore my Wonder Woman necklace and he loved it!  I think my neuro doesnt know what to think of me sometimes. 
The Ugh part is that in october I have to have a special CT scan to measure the size of the hole in my skull so that I can be operated on yet again to get a plate put in.  The doc said it will be titanium.  I am demanding diamond encrusted platinum.  He said he will see what he can do for his super star.  LOL.  But I am just annoyed that I will need yet another surgery. 
These woe is me days are hitting me hard lately.  It needs to stop.  I think my recent hospital stays and the losing of the job have finally hit me and i am just doe with it.  I really am.  I get so mad at myself for getting on that motorcycle 10 months ago.  I effed up and made a mistake and it needs to stop kickin me in the ass.

September (11 months post)
   The past month my parents have been staying with me or they have been dragging me back to my hometown to stay with them.  Yesterday they have finally set me free, I am flying solo again.  Which may or may not be a good thing.  Just so lonely.  I have been used to being a social person and being around people and now i am not.  I look forward to all my doctors appointments or my home care nurse to work on my Picc line to come.  It is something to do and someone to talk to.
And living in the community where I worked in the elementary school kind of hurts.  Yesterday I was at CVS getting my meds and some kids from the school were there.  They were sooo excited to see me.  All ran over and hugged me and then asked why I was not in school.   I just said that I did not know why I was not there and that I miss them all terribly.  And then they started asking the questions about my picc line.  They all know that I am Wonder Woman, so I said it was how I get my Wonder Woman super powers.  HAH!  But after I left there I went home and started to cry because I miss the kids, I miss my job, and as usual, I miss my mother effin life!

Don't always expect funny

I know that I am known for being pretty funny and sarcastic. I am just going to say right now, don't always expect that from me on this.  It will come out sometimes, hell probably most of the time, but I feel it's only fair to give the disclaimer right up front.

I love how I have my degree in English Writing and have done nothing with it.  Which is fine since I just randomly picked a major that was "easy" and here I am writing writing writing away and liking it.  Maybe I should have scrambled my brain 13 years ago.

It is coming up on the one year anniversary of the "new" me.  What a frigging year it has been.  Multiple hospital stays, many trips from Western to Eastern PA, physical therapy, occupational therapy, speech therapy, cognitive therapy, neuropsych testing, etc.  Blowing away all my therapists and doctors with my skills.  Not being able to work and then the thrill of my first day back at work to now.  Well, we won't discuss now.  I won't discuss now because I am trying to have some class.  And lord knows with me, that does not happen often at all.  So write this day down in your calendar folks!

With the one year coming up, I am finally in the anger stage of all of this.  For the most part I have kept myself together over the year.  Yeah I have been annoyed now and then and probably down right pissed, but now I am in full blown pissed off mode.  Pissed at myself, pissed at the person I was with, pissed at life in general.  Again, I know I am lucky to be alive, I am lucky to be as cognitively aware of things.  I know I could have been a vegetable, I could have been paralyzed, I could have died.  I know this.  But sometimes I wonder, it's just a fleeting thought, if I would be better off if I was a little less self aware of my deficits, of my differences, of the "new" me, my new life.  Would I be happier if I did not realize these things? Who knows!

My phone used to ring or beep with texts from people to do stuff with.  Wanna go for a ride?  Lets go out to lunch? Wanna go for a walk/hike?  Lets go get our drink on!!!  (one of my favs...yeah go ahead judge me if you want, I don't care).  Or texting people til 1 or 2 or3 in the a.m.  Now it is mostly mom and dad making sure I am ok, CVS to remind me to get my meds or refill a script, and any of the numerous UPMC offices calling me about appointments.  My social life revolves around UPMC.  It's to the point where I like going to any of the hospitals my appointments are in.

This is a preview of my life.  I swear I will be funny sometimes..the "old" me.

Thursday, September 9, 2010

The beginning

I figured since I have so much free time on my hands I might as well do this.  I have been thinking about it for some time and now I am doing.  Thinking is overrated.  I obviously do not think things through too well.  If I did, I would not be where I am today.

Yes, in October I was in a motorcycle accident.  You can ask me questions about it, but I do not remember it at all.  Hell, I don't even remember being on the bike.  Well, I do remember getting on it and then getting off of it.  So how I smashed my head is beyond me.

Folks, I have a Traumatic Brain Injury.  I have had 3 different brain/skull surgeries in the past 11 months.  But I am still alive and kicking and as sarcastic as ever!  I am a very high functioning TBI'er.  Yes, I know I am lucky to be alive so don't tell me that, but I still don't like my new life.  The new life of mine since I scrambled my brain.

There have been many ups and downs since the accident.  Some of the ups, which may seem strange, but if you ever had a brain injury or know anyone else with one, these little things can be ups.
  Taking my first stand up shower, not having to use a shower seat!
   Being able to complete reading a book!
  Using the treadmill
  Passing the state evaluation to be able to drive again.
  Finally being able to go to the grocery store without feeling so overwhelmed and freaked out
  Multi-tasking just a little bit
  Getting off of LOTS of meds.

  Yeah these are some of the ups that I remember.  (yeah there are more, but sadly with scrambled brain the memory is not the same)

   This is just the beginning of my ramblings.  Hope you all will enjoy my ramblings because I have nothing else to do so there may be a lot!